Pulmonary Embolism Reassurance

[Greyhound22]

I was wondering if anyone had any positive stories after being diagnosed with a PE.

I was diagnosed with pneumonia and taken in to hospital the end of September. Had a VQ scan on the Monday and was told I had a small clot in my left lung. I had been on injections and they then put me on Rivaroxaban.

They were not overly concerned and said that I should make a full recovery. I stopped my combined pill which that thought was the cause.

Anyway for the first few weeks I felt almost back to normal. No real problems.

The last couple of weeks I have had bouts of feeling really unwell. Just very uncomfortable and breathless. I've been to the hospital a couple of times and they've said basically it's my body heeling and it will last 3 months or so and there's nothing they can do.

I feel so down and miserable. Every twitch makes me worry and I can't really do anything with DS4 and can't enjoy doing much like walking my dog etc,

I'm so frustrated and frightened - I felt so much better yesterday and then back downhill today.

I've spoken to a couple of people who had PE's many years ago and are totally fine.

Has anyone got any more recent experience of recovery times etc? I'm meant to be going on holiday in a couple of weeks and I'm so sad I'm not really going to be well enough.

Thanks

Have you seen a consultant? I'd be asking for a referral to a specialist.

Yup I've had 2 "massive clots on both lungs" ones now, full on "week in the respiratory ward on total bedrest" ones. You will be hypersensitive to every wheeze and twitch for a while, and it will take a while to recover - your body has to try and heal and clear all the clot remainders away, it will take time. Just take things a bit easier - think of it like you are recovering from a nasty cold or chest infection, you can't barrel around at 100% speed all day right away.

I had multiple PE also caused by the pill. I do know that the worry afterwards can be awful and you need to give yourself time. I was in hospital for a week, off work for 2 or 3 weeks after that, then had a 6 week phased return (recommended by occupational health) working one day in week one, 2 days the next week and so on, with the final 2 weeks working 4 days with a recovery day in the middle. By the end of that period (so about 10 weeks) I would say I was feeling much, much better, so 3 months sounds realistic to me.

Try to take it slow and steady. A holiday could be just the ticket couldn't it? Can you cut back on the sight seeing a bit and strategically just take in a few things alongside lots of relaxing.
for you.

I'm waiting for a Haematology referral Somerville. Taking ages.

Thanks for the replies. Did you all have quite bad chest pain? As in it's not really pain but really sore?

We're going to Bluestone for the week so log cabin in Wales so not too much action but I would like to swim with the little one etc.

I'm on week 7 now and seem to have one good day followed by a bad one.

I feel so down. I also don't know when to go to the drs etc - I feel like I'm wasting their time but I'm also scared.

Are you still on the rivoraxaban? My friend was told to stop that by her GP, after 3 months, but her consultant appointment came through the next week and he was horrified and put her back on a different blood thinner (as she was getting side effects from that one) on lower dose, for life.
All the while you're on a blood thinner you're extremely unlike to have another clot. It must be scary though.

My friend is fine, BTW, a few years or so on. I think it took a few months for the area of lung damage from the clot to heal and stop being painful. There was talk of her having a patch of infection and needing anti-biotics around that time, but I can't remember whether she needed them in the end.

Yes I'm on it for 6 months. So until March. Wondering if a lot of the side effects are off it. There is the possibility of changing to another but I would like to see a consultant first.

Feeling totally miserable ☹️

Its a pretty serious thing to happen to you and its only been 6 or 7 weeks - it's frustrating but you have to wait it out, it wont totally fix itself overnight. Its a "slow and steady" process.

I know Stormtreader and I need to keep reading that and it's what DH keeps saying.

I'm just so uncomfortable. I don't feel like doing anything and I'm a really active outdoorsy type.

I suffer from terrible anxiety and OCD anyway so it's just exploded.